My Little Stress Relief

I've picked up an old hobby and now making it a business – you know, as if I don't have enough to do with life in general and Broken Hearts of Florida. Since I've been off work on maternity leave, I've gotten back to taking pictures, which I absolutelylove doing. It’s truly a stress reliever for me, and I love to hear a family’s reaction when they see their pictures. Although I love taking the typical pictures that almost all photographers shoot, I’ll also be offering to take photos of a family’s medical journey. I know firsthand how important is to document that time that your child is going through a health-related event, such as a hospitalization or a regular checkup. For many of us, doctors’visits, clinic appointments and hospital stays are a typical part of our lives and it’s often important to tell that story through photographs.

When my daughter Taylor was born, we had no idea what her future held because just 10 years ago, the double-arterial-switch procedure used to repair her heart defect (congenitally corrected transposition of the greater arteries) had only been done 29 times at Children’s Hospital Boston where she went for her open-heart surgery. Taylor had just a 50-50 chance of making it, without complications. But Taylor is always complicated, so we always worried she wouldn’t survive. But she’s also a fighter, and now, 10 years later, she is strong and healthy, and I am thankful to have a photo journal of her life so far.

Photos capture the special moments and major events in our lives. Now that I am doing photography again, I want to offer other families that gift of a photographic documentary of their child’s medical journal. We all hope and have faith that all of our children make it through their ordeals, although very sadly, not every journey has a fairy-tale ending; I would strive to depict that story with compassion and sensitivity.

If you’re interested, please don’t hesitate to call me. We can talk through what you’re looking for, and create a plan and schedule that works. My contact information is 850-228-3200.

Taylor - 6 months Post Op

On June 6, 2012 Taylor was 6 months post op from getting her 7th pacemaker and new leads. Which means she is finally off her physical restrictions of not being able to do anything that would hurt her and sternum. Woohoo! Keeping Taylor from doing anything physcial was extremely hard and very heart breaking to her! I hated telling her no about things that she couldn't do but I didn't want us to have to go back in the operating room to fix anything because we fell running or falling off the trampoline. 

I am very glad to say that FINALLY after her 12th surgery she didn't have any complications and NO MORE THUMPING!! Thank you God!!! I was so nervous that she would have another complication to make her recovery that much longer.  Taylor is such a trooper and has been through so much in her 10 years that I can only imagine what she has gone through and what she remembers...

Taylor's teacher and school handled her being out for a month and half pretty good. Although there were times I wasn't sure she was gonna get the school work done, she did. I will say that if we have a choice to have surgery while out of school I'm all for it because not only stressing about recovery we were also stressing about getting her school work done. So in August when school gets back in, Taylor will be a 5th grader. I can't believe it...my baby girl is growing up so fast!

Taylor goes back to Shands for a check up on July 18th to make sure all is well and pacemaker is working well and that the setting are where they need to be. Thank you to everyone who prayed, and who continues to pray, for Taylor, her surgeon, and nurses to help her through this surgery. The prayers worked and we had yet another miracle.

From Surgery to 1 Week After Surgery

I'm not really sure how I wanted to start my blog the first work that comes to my head is "AMAZING". When we were waiting in the holding area for them to take Taylor off to surgery she was so relaxed and just kept look at us to make sure that we were ok. When we hugged her goodbye as they were taking her off to surgery for the 12th heart surgery, she kept checking to make sure that we were OK. Of course we weren't and we tried to be strong but when you know what your kid is about to go through yet again its so hard not to have the fears and worries that go along with major surgery. From the time she left us to the time we got to see her again would be about 6 hours. I was extremely grateful for some family and friends, Dad, Momma-Nette, Karen, Aunt Rhonda, Candi and her husband, that came to sit with us in the waiting room to help our time go by which was so nice! Thank you all!

Around 1:45 pm we got to see Taylor. She was drugged and fighting to stay awake. The nurse showed me her incisions and it wasn't what I had expected and then she had 2 chest tubes and external pacer wires in case the new pacemaker went bad which has been known to happen for Taylor. Robin and I were standing in her room as the nurses and doctors got her situated her monitor starts going off saying her heart rate was 222. We start freaking out and so does the nurse. After a minute, which seemed much longer she noticed that she was fine but that the monitor was double reading her heart rate. I've known parents that have been in situations like that but I never have and was scared to death but then so thankful it was just a technology issue.

The next day was another rough day. The nurse had Taylor get up and sit in a chair to try and drain the chest tubes. Taylor was so scared and they hurt her so much but she sat there for about 20 minutes trying to deal with the pain. She got to lay down for awhile and then got her up again later that afternoon to drain them 1 more time and then it was time to take the tubes out. Taylor had chest tubes when she was a baby so I was never in the room when they did things to her and when I heard that they are taking the chest tubes out I wasn't sure what to expect. Apparently the foot of the bed is the "splash zone" and boy was it. They literally yanked those tubes out and fluid went every where. Taylor was freaked out and hurting so much after that. I felt so bad for her but I know that by doing this she was 1 step closer to going home.

The 3rd day was a little easier but still a little rough. Since everything seemed to be working ok it was time to take out the external pacing wires. Taylor thought it was gonna be like the chest tubes coming out so she was pretty worked up. The wires came out, 2 arterial lines (1 was stitched to her neck) out, and only had 1 IV that would stay in until she went home. Taylor was much happier with being able to move around without being hooked up to so much stuff.

The 4th day was great. We had a pacemaker check, echo, and then it was time to go home and Taylor was told to only take her Coreg and not her aspirin and Lisinopril. We will see how it affects her function by not being on them but until then we will enjoy only having to take 1 pill twice a day.

Its been 1 week since surgery and Taylor is doing fantastic. Her main complaints are her incisions itching and that she can't do anything for about 8 weeks. I feel bad for her but with what she went through last week is truly amazing and she is the strongest person I know. She has had no pain medicine since Thursday but every now and again she might move wrong and she hurts herself so she takes a Tylenol. She is such a trooper and I'm so proud of her!

Surgery Scheduled...

Since June 2009, Taylor has been dealing with her thumping on and off as the leads have gotten worse and settings to the pacemaker have changed to compensate with the leads. We finally got word that Taylor will be having surgery on December 6th to replace the leads that she has had for 9 years and her pacemaker she got in March of 2009. The new leads will hopefully be put in her heart so she will have a better connection and have hopes that the pacemaker could possibly be our 10 YEAR pacemaker. Having a 10 year pacemaker would be a HUGE improvement as she has her 6th pacemaker now and she is 9!

Of course as a mom I don't want my kid to go through surgery yet again but to hear her say her heart hurts, that it feels like someone is kicking her in the chest and that she is thumping again is something I could live without. I really hope all of this goes away after surgery because I am tired of feeling helpless and telling her I'm sorry but there is nothing I can do. I want Taylor to have as normal of a childhood as she can being a heart kid and not have to have distractions all the time with the pacemaker hurting her or causing her to thump. Taylor is actually happy that she will be having surgery for this stop. I've wondered if she really knows whats going to happen and I think she does. Her only request is that the IV goes in AFTER they put her to sleep so I will try to do my best to have her wish come true.

As of now Taylor will have pre-op on December 5th and then surgery on the 6th. The big question is when will she get to go home and that question is huge especially with Taylor and her history of doing things the hard way and keeping the doctors on their toes and curious as to what is going on. If all goes well I hope we come home after 4 to 5 days and she will be home bound from school probably till about mid-January so she can have plenty of time to heal.

I ask for prayers as we prepare for surgery number 12 and pacemaker number 7. I know she will be in good hands but I just pray that she stays strong and continues to fight this battle that she has fought so hard for the past 9 years. I love you Taylor Madison!

Thumping Update

Its hard to believe that its been a year since my last blog update. So here you go...June 29, 2011 Taylor had an appointment with Dr. Fricker just for a check up. Here lately Taylor's thumping has been more frequent and sometimes the thumps are harder than normal so needless to say I'm glad she had her appointment.

We got to see our favorite Medtronic Rep Cheryl and while she was visiting us she took a peak at Taylor's pacemaker. Taylor's pacemaker is doing pretty good and she has about a year left on the battery but overall things looked good. She also said that she really doesn't understand why Taylor is still thumping. That's my kid keeping the doctors on their toes.

Dr. Fricker came in and took a peak at Taylor records and listened to her heart. As he was talking to me about Taylor's thumping and how it would be a year until she had a pacemaker change, Taylor told him that the thumping needed to stop NOW. He wasn't expecting that out of her but she has had enough.

When I got home I made sure that she understood that changing out her pacemaker and making the thumping stop was surgery and that meant needles and pain. She didn't care. She wants it to stop ASAP. Then I told her that once she had surgery it would be 6 weeks before she could go swimming and that broke her heart. REALLY??? Needles and pain your ok with but no swimming for 6 weeks makes you cry? That's my crazy kid! So even though she wants it planned for during the school year, sneaky little kid, I told her we would try to schedule it for August so she could enjoy the month of July and some fun in the sun.

Currently I'm still waiting to hear back from Dr. Fricker about the surgery but once it is set I will give an update so prayers can be said.

Lower Lobe Pnemonia

Almost a week from going to Camp Boggy Creek Taylor starts having a deep chest cough with no other symptoms. After a few days of the cough not getting any better we take her to the doctor to see whats going on. We had to leave and go get x-rays and as it turns out Taylor has Lower Lobe Pneumonia. I felt so bad for her with the fevers and the cough that won't go away she is miserable.

All week we told Taylor that depending on how she felt, she may not get to go to camp. We watched her and with no fevers we decided she could go. Everyone was aware that she needed to take it easy at camp but that she should be doing better after 4 days of antibiotic.

Saturday we left for Gainesville and Taylor was so excited about going to see all her friends. The one thing that Taylor hadn't done since she was sick was run around and act normal and of course when she got there she was playing and having a good time. Right before they started getting on the bus Taylor started getting tired. I kept feeling her to see if she had a temp but she felt normal. My gut said that she needed to stay home but I know she wanted to go. So of course we let her go and she did great getting on the bus without crying for the first year. I was glad she was fine and it was a long 2 hour ride back because I was missing her and worried about her all at the same time.

After being home for about 2 hours I get a phone call and its Dr. Sue at camp. She says Taylor was running a fever of 102.4 and they wanted to send her to the hospital for x-rays and blood work. Of course we got back in the truck and drove down to Camp Boggy Creek, 4 hours away. We got there and of course she is feeling better cause her fever went away. We still brought her home and by the time we got home at 1 in the morning she was running another temp.

We are on day 6 of antibiotics and she still continues to run fevers on and off and they are just high enough to make her sleepy and not feel good. I'm hoping to get her back into doctor to just make sure we aren't missing anything and that we are on the slow road to recovery.

Panama City

I enjoyed being in Panama City today even though it was for work. I had to stop by the beach and put my feet in the sand and in the Gulf. The water was beautiful and hated that I had to leave. Just thought I would share the pictures so everyone could enjoy. I hate to think what it will look like once the oil gets here. :-(